WELCOME TO HOLLAND
by
Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Our trip to Holland has had several detours, in fact, we've even been to Italy briefly a time or two. I feel like most of our time so far has been mid-air, not knowing when or where we would land. Now we're in Holland. Love the people! Still adjusting otherwise. It is an interesting trip with our other kids in Italy. Lots of blessings.
love that
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ReplyDeleteI can not believe that I have found you! I have a 13 year old girl with bicoronal craniosynostosis. I was googling craniosynostosis and ADHD, and there was not much really good stuff, but I somehow stumbled upon your blog. I had a hard time deciding which post to put my first comment on to introduce myself and Rayna. I decided this would be the best one, because it is exactly how I feel every single day. I would not have been able to find the words for it, and this writer did a great job of it. I am so glad you posted it, and I don't feel so alone! I have so much in common with you and your daily life, and Rayna has so much in common with Calvin, but I am not going to create a long list and write a novel right here. I think, if you are open to it, I could put comments on some of your individual posts on how I understand your issues and concerns, and what is similar with us. In general, Rayna has been diagnosed with ADHD and tried 5 different meds with none of them working as well as they should, so she is off those meds. Her behavior issues are not as severe as Calvins's, but she does have daily issues. some can seems very severe, especially emotionally, however she is not as physical as Calvin seems to be (she has never stood on top of the car if she didn't want to get in!) Perhaps because the behaviors are less severe, they do not get the attention they sometimes deserve from doctors, psychiatrist, teachers, therapists, and even her dad and me. I will be reading a post of yours and think 'Wow, Calvin has the same behavior issue but more severe than Rayna,' and in the next paragraph read your actions to work toward helping him and how you feel, and think 'that is exactly the same for me.' So it seems my actions and thoughts and concerns are the same as yours even though the kids have slightly different behavior issues and levels of severity. My husband is a petrophysicist, I am an engineer, neither of us are in the medical field or teachers, so working with a child with these issues is the biggest challenge we could have been given. We are from Texas, I don't work now and haven't for years, and we thought things were under control enough--long story--for my husband to finally make the career move to move internationally. So here we are in Indonesia where things have gone to hell in a handbasket, as you might expect. Rayna has on older sister with severe dyslexia. Miranda is 16. We thought she was also in a spot where moving would work out well also. Socially she has done great, but not educationally. We are doubly challenged. I do get tired, but as you say, what choice do I have, I want to be the best mom I can be so I take it day by day, week by week, dealing with everything I can and more to do the best I can for them. Welcome to Holland!!
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